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Parenting with MD Wrap Up

Last month a group of five parents with MD joined in for a fantastic 2-hour conversation about parenting when you have MD. Participants got to talk about very specific experiences of life as a parent with disability. Topics included:

Positive impact on children

All participants agreed that the experience of having family members who live with MD generally was a positive experience and greatly contributes to children developing resilience, perspective and personal growth.

“Both children are ‘natural carers’, have gone into caring professions.”

“Kids may be stronger in the future for going through tough times. Will grow and learn and be grateful.”

Transition to paid care & support

During this peer group there was a lot of discussion about the benefits of introducing care and support into the home, and freeing up family members to be just that family, rather than full time carers. This was particularly poignant as it was led from people with lived experience rather than OTs or other medical professionals. There was excellent discussion and tips about how to do this eg gradually, finding right people. The group talked about when and how to start to find support workers, and the various options available.

“You can employ workers yourself – I say you are working for me and this is what I expect. Start with buddy shifts with new worker working alongside more experienced worker, provide training and set expectations. Interview well, asking value based questions to get a good sense of how they would respond in different situations. Write lists, I haven’t got time to answer lots of questions about what the worker needs to do.”

Getting back to being a parent to my children

“Getting paid supports has enabled my children to become my children again. They had become more like carers for some time. Once I got over my concerns about using carers for personal care support, I can now be parent of my children and stop asking them to be my carer.”

“Everything that was being done by husband and children is now being done by paid supports.”

Transition to using mobility equipment

“Over past 10 years, have transitioned from walking to a full time power wheelchair user. Getting a powerchair last year was the best thing that has ever happened! Changed my life! I had become too scared to do anything, was worried about the risk of falling, couldn’t get up by myself, had stopped going out, meeting up with old friends and social groups, would make excuses not to go out. Using a powerchair has given me the confidence to go out with my children. I’m no longer worrying about falling over in public and embarrassing my kids!”

At the end of the meet up participants expressed the positives of Peer Connection:

“Sharing ideas and experiences – feel like I am opening the door to be more receptive to the idea of using support workers.”

“Nice to have social chat, be encouraged to keep going, work out what suits me, and continue until I get there!”

“Feel grateful that I was listened to and was understood, not judged! Grateful to hear other’s stories and get ideas.”

“Good to see that everyone’s very similar, got lots of things in common. I’m looking forward to face to face connections!”

This group will meet every 3-4 months, hoping to continue online to include people from regional areas, as well as more face to face Peer Connect activities this year. If you are a parent with MD and would like to connect please contact Carolyn on carolyn.cm@mdnsw.org.au or 0408472510